Paul Suntup

Paul’s pancreatitis bouts began in 2017, and he visited the local emergency room, where doctors noticed high lipase and amylase levels. They wanted to admit him, but Paul refused. About a month later, he had another major pancreatitis attack. This time, he showed up with an overnight bag.

Doctors expressed concern about the ongoing bouts of pancreatitis, noting that every attack increases the odds of pancreatic cancer.

“That hit me between the eyes,” Paul said. “We were talking about pancreatitis, and then all of a sudden, we were talking about cancer.”

Paul stayed in the hospital until his lipase levels came down, returning for follow-up scans every few months. About a year later, doctors saw something concerning, leading to an ERCP and a biopsy to confirm the presence of cancer. Doctors weren’t initially sure what kind, though, and it took several labs to land at the diagnosis of acinar cell carcinoma.

In retrospect, Paul recalls having stomachaches for years. He’d undergone scans and tests to try to figure out the cause, but nothing ever came up. This is not uncommon with pancreatic cancer, which can be difficult to detect at its early stages.

Paul’s diagnosis left him with a difficult decision to make. He was going to have surgery – that much he knew. What he had a harder time deciding was whether to have chemotherapy, given the specifics of his rare form of cancer and the recommendations of various doctors.

He’d seen one oncologist who recommended he not have chemo post-surgery. Other doctors agreed, stating they weren’t sure it would be beneficial in Paul’s particular case. Some doctors he saw weren’t even familiar with acinar cell carcinoma, and since Paul, himself, preferred not to have chemo if he could avoid it, he opted to forgo it – for the time being.

Paul underwent a distal pancreatectomy and splenectomy in December of 2018, after a gastroenterologist put him in touch with a world-renowned cancer surgeon who’d agreed to take his case. The doctor believed he could remove all of Paul’s tumor laparoscopically. After the procedure, he gave Paul “the best post-op report one can have.” All of his margins were clear, and they’d also tested 22 lymph nodes for signs of cancer, all of which also came back negative.

While Paul pondered next steps, he got something of a “gift” for his 70th birthday. The U.S. Food & Drug Administration approved a “PARP inhibitor,” a type of targeted therapy treatment, called LYNPARZA, for people with certain forms of pancreatic cancer who also had the BRCA2 gene mutation – which Paul did. Within about two weeks, he had the medicine in his house.

Everything worked well for about 10 months, with all tumors shrinking in size. The LYNPARZA led to side effects for Paul that included anemia, so he went off of it for about three weeks before resuming it, but at about two-thirds of his original dose. It wasn’t as effective this time, so Paul stopped taking it, instead opting to have something called a “Y90 radioembolization” treatment. The treatment involves finding out which blood vessels within the liver are feeding the tumors and injecting radiation into them.

Paul also had Stereotactic Body Radiation Therapy, or SBRT, to treat tumors on his liver and peritoneum. Once tumors appeared on his peritoneum, Paul’s oncologist suspected his condition might be systemic and wanted to treat it as such, rather than relying on targeted therapy. Paul’s oncologist also wanted him to start chemotherapy again. Instead of going back on FOLFIRINOX, Paul opted to have “metronomic” chemotherapy, which involves giving lower, consistent doses over a longer period of time.

Such was the case for Paul, so his team turned to plan B for one of his tumors, opting for something called a “microwave ablation.” A microwave ablation is another minimally invasive treatment that uses heat created through microwave energy to destroy tumors. For the other tumor, Paul had an “alcohol ablation,” which involves injecting alcohol into a tumor or tissue to dehydrate and kill the cells.

“Interesting, right?” Paul said. “Alcohol kills your liver, but it can also kill tumors.”

At Paul’s most recent checkup, a CAT scan identified some spots on his rib. This didn’t particularly surprise Paul, as he’d been dealing with ongoing pain in the area for quite a while. His care team believed the spots were likely small fractures, rather than cancer, and that the remaining tumors Paul had were now either dead or gone. As a result, his radiologist told him he was “NED,” meaning he showed “no evidence of disease.” While this was great news for Paul, he’s well aware of the risk of a recurrence, so looks ahead to the future with cautious optimism. He also continues to experience some ongoing health issues, among them dizziness and lightheadedness, and he also bruises easily.